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autism no eye contact

Autism Tips for Emergency Responders: No Eye Contact

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autism no eye contact

image courtesy of freedigitalphotos.net

I read an awesome article on TheMighty.com that asked 16 different people on the autism spectrum to describe why making eye contact can be difficult for them. Any insights like this help me be a better parent to my autistic teens and a better educator for emergency responders.

Lack of eye contact may be considered rude or antisocial to those who don’t understand it. However, in an emergency situation that involves first responders, it can be misconstrued as evidence of guilt, non-compliance, or even altered mental status, all of which can put an emergency responder on the defensive and potentially lead to a call going downhill fast.

The Mighty asked their readers with autism who find eye contact difficult to share a description of what it’s like for them. I think some of these quotes are really helpful for emergency responders to be able to understand and identify what’s really going on when someone with autism cannot look at them. The full article can be found here, but some of my favorite descriptions are:

“It’s abstract to me and can be draining. Looking at someone else in the eye means I am taking in everything about them as a person, and I become overloaded. It can disrupt any thought or speaking process I have going on and zaps my energy quickly.” — Laura Spoerl

“To me, eye contact feels like I’m being stared at, like I’m being scrutinized and judged. It makes me uncomfortable because I feel like I’m under immense pressure, and the tension builds and builds until finally I have to look away. It feels almost confrontational, which causes me a lot of anxiety.”— Emma Wozny

“It can feel like you’re standing there naked. It’s very difficult to form a coherent thought with all of this going on in your head. ” — Megan Klein

“When I make eye contact, the world around me blocks out. I can only process the immense pain and discomfort that comes to my brain. This pain goes if I look away.” — Lucy Clapham

“For me it can be a physical pain; it feels like burning with too many emotions, and I just can’t take it in all at once.” — Rosie Howard

“There’s plenty enough for us to concentrate on mid-conversation without the demand to do something which, quite frankly, feels very unnatural to many of us. You can have my eye contact, or you can have my concentration. Choose whichever one you value more.”– Chris Bonnello, from Autistic Not Weird

“Eye contact is hard for me because I am easily overwhelmed by lots of different input. When I am trying to listen, follow, or contribute to a conversation or just manage all my different sensitivities, it is easiest, most comfortable and least painful for me to not make eye contact. I listen and focus better when I am not making eye contact.” — Erin McKinney

My co-trainer at Spirit of Autism, Austin Harris, told me what it’s like for him, and how he’s learned to manage it:

“Eye contact is difficult for me because it makes me very nervous when I’m being looked at directly. It makes me feel uncomfortable in an unexplainable way. One tool I use to combat this is quick contact by looking at multiple people and objects. This works especially well for public speaking and teaching where you need to talk to the group instead of one person. What I do is I make brief contact every so often with different individuals so I am not focusing on just one person’s eyes.”

My daughter shared this with me about her experience:

“If I’m coming up on a person about to pass me, I drop my gaze immediately. If I happen to accidentally lock eyes with them, I feel a tinge of panic. What are they thinking? Are they thinking about me at all? Did I rub them the wrong way? I’d rather be invisible to them, and chances are likely that they thought nothing of it, but I remember it.

There’s something very uncomfortable about looking directly into somebody’s eyes while they’re staring at you. I don’t know what’s going on and I’m trying to evaluate the situation. And how long are you supposed to keep eye contact, anyway? If it’s too short, it may come across as dismissive; if it’s too long, it’s way too awkward. It’s a lot of processing and confusion that goes on underneath the surface in a matter of seconds, and when there are responses and replies expected of you on top of that, it gets to be overwhelming sometimes.”

I think the biggest takeaways for emergency responders when it comes to lack of eye contact are:

  1. If someone with autism isn’t looking at you directly it does not mean they aren’t listening.
  2. It can be physically painful for an autistic person to maintain eye contact with you.
  3. A person with autism may need to avoid eye contact in order to process and focus on what you’re saying to them.

Rather than demanding that someone look at you when you are speaking, it may be helpful to simply ask a person that’s not keeping eye contact with you if they are listening, if they understand you, if they can repeat back what you just said, or even if they’d prefer to communicate by writing.

When Your Child Wanders…

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When Justin was in first grade the principal had a strict policy of no parents walking their children into the classroom. (More about that inane rule and how I combated it in another post…) But for that portion of the year I was entering the school with him and saying goodbye just before he turned the corner to head to class.

One morning I dropped him off, business as usual. At that time, I would typically turn right out of the parking lot and head to work; however that day I realized I forgot my lunch AND needed to get gas in the car. I drove back home and then past the school once again toward the gas station. The bell had rung and school was in session. About six blocks past the school I saw a small child with a backpack casually walking down the street. My heart sank as I realized it was MY child.

When I pulled over and brought him back to school they had no concern whatsoever that he hadn’t made it to class – they simply thought he was out sick that day. I went over and over in my head the scenarios that COULD HAVE played out if I hadn’t forgotten my lunch and needed gas that day. The thought of the myriad possible outcomes were magnified by the realization that I would not have even found out he was missing until I went to pick him up at the end of the work day.

Another time, he was playing with the garden hose outside in the front yard. This was a normal activity for him, and I always peeked out the window frequently to check on him. On this particular day, I blinked and he disappeared. Gone. No shirt, wet pants, and no shoes… vanished.

I immediately grabbed his sister and her best friend and started screaming his name while walking up and down our dead end block. Some neighbors heard my panicked shouts and offered to drive the vicinity and look for him. A thousand thoughts were racing through my head as I searched every nook and cranny of the woods, front and back yard, inside the house several times (maybe he’s just hiding, oh please God let him be hiding), and down several neighboring blocks.

I called the police. Being in the Fire Department I heard my own call go over the scanner and it really hit me. My baby is lost. What have I done? How could this have happened? It was just a few minutes…

I will never forget the feelings that washed over me as I saw my neighbor driving up with Justin in the front seat. Tears welled up as I experienced every possible human emotion simultaneously, hugging him tighter than I ever have. I was able to cancel the police call and take my little angel home to dry off.

He had no explanation for why he left the yard or where he was going. These two experiences absolutely changed my perspective about Autism and wandering.

How do you minimize the risk?

I know how lucky I am that my son is still with me today. That is part of what drives me to train Emergency Responders. However, you must assume that police and fire currently have no knowledge or Autism training and take preventative measures. Here are some practical steps you can take so you don’t have to go through what I did:

1. Safety-proof your home. Home should be a safe haven. In addition to traditional childproofing for small children, you will have to take some extra measures for your child with Autism.

2. Install door alarms. Many children with Autism are prone to wandering. Alarms offer great back up protection. You also may want to consider a personal GPS device for your child.

3. Carry an Autism Emergency ID Card. Emergency ID cards will help people on the scene of an emergency know how to approach and communicate with your child. Include contact information and important behavioral traits of your child.

4. Have your child wear an Emergency ID Tag. In addition to ID cards, tags are another great way to get the attention of emergency responders. If your child cannot tolerate wearing tags around their neck or wrists (if sensory and tactile issues are present), try attaching them to your child’s shoelace. (This of course would not have helped when my child was shirtless and shoeless… but there are so many different kinds of ID tags to choose from now, thank goodness)

5. Arm your child with a form of communication. Whether your child is verbal or non-verbal, communication is a challenge. Create a visual safety book for your child with key questions and answers he or she may be asked in an emergency situation. Practice, practice, practice! I also highly recommend Signing Families for additional communication resources and tools.

6. Get to know your neighbors. It’s a good idea to introduce yourself and your child to your neighbors. You can explain what Autism is, along with some of your child’s behaviors that would strike other people as odd. This way they will call you instead of the police, or help direct your child home if found wandering.

7. Extend the introduction to places you frequent. Introducing your child to a local store owner, diner staff, or other places you regularly visit can go a long way. Instead of a knee-jerk reaction to an odd or inappropriate behavior, a clerk will know your child and be able to intervene safely or inform you of what they may observe. This is also a good idea in vacation spots!

8. Register your child with public safety. Contact your local police precinct, fire department, and hospital and register your child with their database of special needs families.

9. Teach safety procedures to your child. Even with Autism ID cards and tags, your child may still cross the street without looking or enter a dangerous situation. Use real-life situations (like being lost in a store) and repeat drills with your child as often as possible.

10. Use social stories. Teach your child how to handle emergency situations like fire, burglary, blackouts, strangers at the door, when someone is hurt, and calling 911.

Have you had any close calls with your child? What preventative measures do you employ in your home or neighborhood? Let me know by commenting below or posting on my Facebook page – I always welcome your stories and feedback!

Why Emergency Responder Education – Part I

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My son was 18 months old. He was standing next to my bed, humming, as I was folding laundry and separating the piles. Then he walked out. In the time it took me to fold a pair of jeans, this child had walked to the other end of the house, found my keys, figured out which one was the car key (!), went outside, opened the trunk, and climbed in. NO EXAGGERATION.

Around that same time period, I remember driving to an errand, both kids in the back seat, and glanced in my rear view mirror with horror to see my son “surfing” on the arms of his car seat, yet the restraints were still fastened. Holy Houdini! (I went through about three of four different models of car seats that year trying to find a straitjacket-level security device!)

In First Grade, I dropped him off at school, walked halfway with him to his class (the IEP requested we start to assert some independence in the mornings… ha!) and went on my merry way after kisses and high fives like usual. It just so happened that I forgot something from the house. Coincidentally, I also needed gas that morning and went left instead of right, passing the school again. About four blocks from the school, in a direction I normally never would have traveled, was my son, walking with his backpack and singing, without a care in the world. He apparently walked right out of the building after we parted in the hallway, and the teacher assumed he was absent that day… AHHHHHH!!!! No one knew! Imagine what could have happened if I turned right that day!!!!

So these are some crises that sprouted unexpectedly within the structure of a normal day. What if there was a fire in your home, or you were in an auto accident? What if you were hit with severe weather or a natural disaster? What if your child with Autism creates a public disturbance? How would a police officer deal with him or her?

Would an emergency responder recognize the signs of Autism in your child, or would they treat them as if they were mentally ill, on drugs, or non-compliant?

Why Emergency Responder Training is Needed

Many children on the Spectrum have no visible signs of a disorder. An average child in appearance with socially unacceptable behavior that no one understands can lead to a nightmare if public safety is involved. Your child may get pushed around, put in jail, injured, or worse.

It’s vital for emergency responders to identify the signs and behaviors of Autism and learn how to make your child feel as safe and non-threatened as possible to avoid a perilous outcome. Police Officers, Firefighters, and EMTs learn about alcoholics, diabetics, cerebral palsy, and mental retardation. With as many as 1 in 70 children being diagnosed on the Autism Spectrum today, the time has come for everyone to understand! This should be part of standard training. That’s why I am called to begin such training in my own county and work my way out.

Do you think a Firefighter, EMT, or Police Officer would know how to communicate with or understand your child in an emergency? Feel free to comment below!

Stay tuned for Part II of this post… behaviors, tips, and what you can do in YOUR community to help emergency responders learn more!